Of all the questions I had for myself after my spinal cord injury (SCI) 12 years ago, the one I thought would be the simplest has taken me over 12 years to answer. 

In season 2 episode 3 of Ky Dicken’s Telepathy Tapes, she asks, ‘Are ideas alive and do they choose us?’. It’s a fascinating listen! She would say that an idea came to live with me. And over the course of 12 years, it not only guided me to an answer, but the process of getting to the answer has unlocked a trove of spinal cord injury data that will influence spinal cord injury research and the delivery of care in the United States in years to come. 

These are big claims, so let me explain.

To begin, the simple question that came to live with me was this –

How many people with spinal cord injury are living in Oregon?

To my surprise no one knew. There was no state dashboard. No registry. No clear population-level data. For a population that is a high utilizer of the healthcare system – with significant secondary health conditions, frequent hospitalizations, and substantial cost – this lack of data is not just inconvenient, it’s a form of negligence that contributes to avoidable health inequities. How can we design effective systems of care if we don’t know the size and characteristics of the population we aim to serve?

So in 2023, in partnership with Oregon Health Authority, I and my team at Oregon Spinal Cord Injury Connection, queried Oregon’s all medical claims data dataset (All Payer All Claims) using ICD 9 and 10 codes to estimate key statistics about people living with spinal cord injury in Oregon, including 

• Prevalence + incidence
• Demographics + geography
• Healthcare utilization
• Cost of care
  

Now I know that in 2022, there were at least 9,983 people living in Oregon with a spinal cord injury. And that care cost health insurance of all types over $386M, or about $38k per person, which was 5x the cost of care of a non-SCI person in Oregon. This data is the foundation of improving the delivery of care and quality of Oregonians living with SCI.

And equally important, this process of getting to my answer revealed a method that other states can replicate, giving researchers, advocates, and community organizations access to local SCI data. Since presenting at the Unite 2 Fight Paralysis conference in February 2026, I’ve begun working with researchers in Texas, New York, California, and Minnesota to access this data in their states.

Click here to access the full Oregon Data Report and Data Set.